"As an update, Dr. Oz also flew me to New York for a 15 minute segment they taped recently for his TV show. It was on fatigue, and focused especially on CFS a major leap forward for the Oprah community ;-) This was the first segment of the show kind of like the headline of a newspaper! It will likely air in the next 3 weeks. (If I get a few days heads up from the producers, I'll aim to put the date of the show in a newsletter.)

Thanks again for your support. Things are moving forward for folks with CFS!
Dr. T"

The show was taped several weeks ago, before the XMRV news.

I think we need to send more notes to Dr Oz to encourage him to get other people's opinions on this matter.
Teitelbaum is definitely NOT the final authority, and Dr Oz needs to know this from us.

Anyway, thanks for the link. I'm almost afraid to look at what I sent because it's not a good brain day and that little box... anyway, I sent the following :

I have had Myalgic Encephalomyelitis (aka CFS, aka CFIDS) since I contracted an previously unknown virus more than 25 years ago. I believe that this virus is XMRV as was revealed by the Whittemore-Peterson Institute research study released earlier this month.

Everything that has been hypothesized about this condition before the discovery of this virus is pure conjecture. 67% of a well defined ME/CFS cohort was found to have active infection and, in ongoing studies, there is a >95% correlation in antibody testing as compared to 3.7% of the general population.

It has come to my attention that you are doing a show on "CFS" featuring Dr. Jacob Teitelbaum. Dr. Teitelbaum has been a very mixed force in the ME/CFS community; his book, "Fatigued to Fantastic", misrepresents the nature of the illness, those effected and the efficacy of his treatment. I think he is well meaning, as do most of us in the ME/CFS community, but also misguided. It goes without saying that Dr. Teitelbaum has a vested interest in his treatment business.

I would very much like to see Dr. Oz do a show on ME/CFS but, given the enormous amount of press - including, but not limited to, the journal Science, The Wall Street Journal, 2 or 3 pieces in the New York Times, NPR, Reuters... - it seems only prudent that you do not air a show on a story which is currently breaking and risk disseminating information which is now outdated.

I very much enjoy your program and your engaging host, Dr. Oz. I have long felt that he was someone who could actually do an intelligent, insightful and useful program on this confounding topic.

Thank you for your interest in a condition which has historically been badly misunderstood. I look forward to seeing what your good team will do with all the exciting new developments.

Thank you for your time,
Christina

ETA Ok, I read it. I'm not really an idiot. I know it should be "a previously unknown" but I first wrote "an unknown" and scrolled back in the little box... ok, ok, excuses, excuses...

Even if XMRV makes it into the show, Teitelbaum will likely make light of it. As far as he's concerned, it's just one more reason for people to buy his supplements. Here's what he posted on his website:

You guys it's too early. Let the research be confirmed. Let them test a vaccine in lab animals. Etc. Besides, the producers of shows have their own ideas about what to air. Letters to the editor rarely produce a show on that subject. Not trying to be a downer. Just realistic.

Even if XMRV makes it into the show, Teitelbaum will likely make light of it. As far as he's concerned, it's just one more reason for people to buy his supplements. Here's what he posted on his website:

We are suggesting they reconsider, or add to, a show that is airing on Friday featuring Jacob Teitelbaum.

This is not an effort to get them to do a show but to prevent them from airing a full hour that is totally and completely outdated. This would be a step back into the old dark time; even if it's a very open minded step back, it's a step back.

An aside, producers of shows like this have constant pressure to come up with ideas and it's one place where viewers actually do have an influence. Today they did pets, hormones and washing with olive oil. At four ideas a show it's a lot of ideas. We have to be careful what we wish for.

I just called the media coordinator (Frankie) at the WPI (the phone was listed on their site) and talked to her myself about the Dr Oz show. I asked her to contact them regarding our concerns about the XMRV research (needing to be included somehow as a disclaimer or follow-up), and she said she will do so immmediately, and get back to me about it via email.

We are suggesting they reconsider, or add to, a show that is airing on Friday featuring Jacob Teitelbaum.

This is not an effort to get them to do a show but to prevent them from airing a full hour that is totally and completely outdated. This would be a step back into the old dark time; even if it's a very open minded step back, it's a step back.

An aside, producers of shows like this have constant pressure to come up with ideas and it's one place where viewers actually do have an influence. Today they did pets, hormones and washing with olive oil. At four ideas a show it's a lot of ideas. We have to be careful what we wish for.

Peace out,
Koan

Click to expand...

Just my view as one in the business. They have pressure but every publicist is haranguing them, every book publisher is pushing their entire list, every person with a shingle wants to be on, etc etc etc. And they know their market better than we do probably.

Hey I don't want to dampen enthusiasm. I'm very excited about this finding. I can't wait to see further confirmation. There are some big questions to be asked, though, before it becomes the kind of finding you can discuss in terms of people's real lives.

You and I must be living parallel lives! I wrote for broadcast media long before writing for print. In fact, writing for broadcast was how I got my foot in the door years before starting my own production co.

My experience is that tv is an idea maw. What you pitch and what you sell is an idea. The idea is the product. (Or, is the medium the message? )Which is, of course, why so many people are out there shilling ideas - it's a hungry beast.

Oh no, my brain just went zzzzzzzzt and I can't remember a thing.

Ok, Dreambirdie!

Yaaay! That's very good news, indeed! I think we can stand down now that you've done that.

I just called the media coordinator (Frankie) at the WPI (the phone was listed on their site) and talked to her myself about the Dr Oz show. I asked her to contact them regarding our concerns about the XMRV research (needing to be included somehow as a disclaimer or follow-up), and she said she will do so immmediately, and get back to me about it via email.

I will post her response. YAY!!!

Click to expand...

yay dreambirdie! brilliant idea. I'm still going to send an email though as support

1) Do you think Dr. Oz doesn't know about the news? And thus his producers? It was front page news. It was all over the NY Times, the "paper of record", as well as almost every other media outlet. (That was great). How do you think a few people writing him will make a difference? This idea is *out there* and very much so. In fact I'm not sure what he can add to it at this point.

I called up a scientist today to see if my wildest fears were possible (thankfully not) and he knew about it and he's not in our arena at all in any way. He just knows genetics and could explain some stuff to me.

3) Teitelbaum's show is not invalidated by these findings. He does his thing--I met him once years ago, he had some form of chronic fatigue--*not* ME--his approach has some validity for a certain sector, probably. In fact Teitelbaum and his approach really don't have a lot of relevance for a retroviral infection except perhaps adjunctively for some---who knows.

4) As excited as I am about these findings there is some very important work to be done yet--which is why Cort wrote his blog "Stacking the Deck." The data must be replicated. We need to find out if this is an exogenous or endogenous retrovirus. We need (I feel) to see if it's transmissable in ticks and part of the picture of lyme. We need to figure out what's up with that German study. We need to see which antivirals might apply and we need clinical trials. There is much to be done even if it can be done on a speedy schedule--especially considering several decades of zilch...

OTOH: Action is very important. I wish you the best in writing Dr. Oz. We all must do our part in the ways that feel absolutely right to us.

devil's advocate is good jenbooks + hope you don't mind that I stole some of your ideas as well

guess I believe in the power of the people. I'm sure he knows, but in my opinion, if he receives enuf feedback to not only have teitelbaum talk but to also have someone from WPI perhaps then he'd be starting with a more balanced, current picture.

to that end, here's a copy of my letter - adapted from Koan's

Hi Dr Oz and team

I understand you're having Dr Teitelbaum on your show Oct 23 to do a segment on ME/CFS and that this show was taped before the news of the discovery of the xmrv virus by the Whittemore Institute, the National Cancer Institue and the Cleveland Institute on Oct 13. While I'm thrilled that you will be doing a segment on this illness that affects over 3 million AMericans and over 17 million world-wide, I have concerns that Dr Teitelbaum does NOT meet Dr Oz's criteria of "bringing in the best". In fact, if that is how he is represented, it would make me question the expertise of any of Dr Oz's other "experts".

Dr. Teitelbaum has been a very mixed force in the ME/CFS community; his book, "Fatigued to Fantastic", misrepresents the nature of the illness, those effected and the efficacy of his treatment. His approach may have some validity for a certain sector of people with ME/CFS, but his approach really doesn't have a lot of relevance for a retroviral infection except perhaps adjunctively for some---who knows.

I have had Myalgic Encephalomyelitis (aka CFS, aka CFIDS) for over 8 years.
While research continues to find markers for the multiplicity of debilitating symptoms that come with ME/CFS, hypothesizes about the cause of this condition before the discovery of this virus were just that, hypotheses. In this initial study, 67% of a well defined ME/CFS cohort was found to have active xmrv infection and, in ongoing studies, there is a >95% correlation in antibody testing as compared to 3.7% of the general population. So while it is still a hypothosis that xmrv is the cause of ME/CFS, this study strongly indicates that the virus will play a role, most likely causal or partial-causal. I don't believe Dr Teitelbaum is qualified to speak to this subject.

I would very much like to see Dr. Oz do a show on ME/CFS but, given the enormous amount of press - including, but not limited to, the journal Science, The Wall Street Journal, 2 or 3 pieces in the New York Times, NPR, Reuters ... - it seems only prudent that you do not air a show on a story which is currently breaking with only the perspective of one doctor who does not reflect current research and risk disseminating information which is now outdated. I would suggest adding someone from WPI - even just a phone call or skype if not a personal appearance. (You may notice that some of my phrasing is similar to other emails you've received. I'm too tired to compose this letter in full and used a friends letter to you as a basis)

I'm a huge fan of Dr. Oz and your new program and have gotten many people watching it. I have long felt that he was someone who could actually do an intelligent, insightful and useful program on this confounding topic.

Thank you for your interest in a condition which has historically been badly misunderstood and ignored. I look forward to seeing what your good team will do with all the exciting new developments.